Weighing the Good and Bad of OpenNotes

Anjali Gopalan, MD, is a Robert Wood Johnson Foundation (RWJF) Clinical Scholar in residence at the University of Pennsylvania, and a senior fellow at the Leonard Davis Institute of Health Economics. This is part of a series of essays, reprinted from the Leonard Davis Institute of Health Economics’ eMagazine, in which scholars who attended the recent AcademyHealth National Health Policy Conference reflect on the experience.

Propelled by a highly publicized study funded by a $1.4 million grant from the Robert Wood Johnson Foundation, OpenNotes software has created quite a stir in the world of health care reform since 2010. Its high-profile testing paralleled the rise of the Affordable Care Act and the new emphasis that law puts on the computerization of virtually every part of medicine, including the doctor-patient relationship itself.

OpenNotes is a digital tool with which a physician takes and stores the notes of every encounter with a patient. The new aspect of OpenNotes that has drawn so much attention in the press and professional venues like the AcademyHealth National Health Policy Conference is its ability to provide patients instant access to everything the doctor writes about them.

Subject of Much Debate

The question of how this new kind of doctor-patient information collaboration might ultimately affect either party remains the subject of much debate. The conference session that focused on it was entitled "Stirring It Up: Putting Patients in the Middle" and featured Tom Delbanco, MD, the Harvard Medical School professor who is leading the national OpenNotes development and implementation effort.

Delbanco is eloquent in his promotion of the system and the benefits of such transparency for patients and physicians: improved patient education and provider-patient communication, enhanced patient ability to remember and review topics discussed, clearer understanding of medication and other therapeutic instructions, the patients' greater sense of control over their health and health care, and the ability to quickly and efficiently share relevant information with other health care providers or family members.

Confusing and Worrying Patients?

As a clinician I appreciate these potential benefits but am mindful of other concerns and Delbanco touched on: creating confusion and worry for patients, increasing the volume of questions/correspondence for already time-constrained primary care providers, and lengthening the time devoted to writing or dictating patient notes.

Delbanco's recap of the results from physicians and patients at the end of the OpenNotes one-year pilot program seemed compelling. Few patients reported confusion or excess worry, few physicians reported increased volume of questions/correspondence, and fewer than 20 percent of physicians reported that their notes/dictation took more time to complete.

But I left the session questioning the face validity of these findings because it seems to me that the only way to effectively address the potential issues of patient confusion, worry and increased questions is to change the language and content of physicians' visit notes and devote more time and effort to the writing and dictation of those records.

Health Literacy Concerns

For one thing, patients' literacy levels vary widely; for another, even those patients with high levels of health literacy cannot be expected to deal with all the medical jargon, abbreviations and innumerable acronyms that pepper a typical doctor's encounter notes.

Further, there is a certain level of uncertainty that physicians express in notes that many patients would understandably find nerve-wracking and unsettling. While listing the outer parameters of a differential diagnosis is a normal process for physicians, discussing our differential diagnoses with patients is trickier.

How could a patient not be confused, worried and filled with questions when reading something like, "leukocytosis, anemia-malignancy?? Rec BM bx" without further details and explanation? Adequately addressing this kind of uncertainty in a written or dictated note will inevitably take more time and effort from physicians. How could it not?

All this is not to say that the benefits of a program like OpenNotes will not outweigh these concerns and problems. It's not necessarily a bad thing for physicians to take more time and care in the writing of their patient notes. But, for programs like OpenNotes to work to their full potential, we must focus on changing the ways in which physicians document their patient encounters. That includes increasing awareness of patients' varying health literacy levels and addressing the issue of reimbursement for the time physicians devote to such documentation and communication with patients.